Abandon All Hope

Journal of Clinical Oncology has an Art of Oncology piece about the role of investigational therapies in patients with refractory cancers - specifically arguing that it is very important not to give up 'hope' too soon and to make sure patients are informed about investigational therapies 'positively.' Two, rather remarkable, case descriptions are included, including one of a man with hairy cell leukemia who apparently was told for over 20 years with each relapse that he 'should receive palliative care,' chose instead investigational treatments, and did really well for a long time.

Fine. The cringe-inducing problem here is with their rhetoric around the term 'palliative care' as exemplified best by this palliative care = abandoning hope paragraph:

The distinction between palliative care and participating in investigational therapeutic protocols is the issue of hope. A move to palliative care requires that the individual accept a state of hopelessness. Many patients turn to unproven remedies to restore hope. In the case of investigational therapeutics, the patient is willing to participate in a process that offers not only hope for the patient as an individual, but makes a substantial contribution to the body of knowledge that will benefit patients in the future. Therefore, though there may be a point at which continuing therapy is unrealistic, or when the comfort offered from palliative care is preferable, it is crucial to acknowledge how difficult it is for anyone to know when a patient reaches this point. Breakthroughs, by definition, imply successful treatment in a situation that was previously considered hopeless.

Obviously, this is not what one wants to read in the pages of JCO. To play devil's advocate (with myself I guess), it is important to realize that we really do have a problem in palliative care with terminology which is confusing all around, and we haven't been able to fix this (yet). The problem is that there are many (overlapping) flavors of meaning of 'palliative' and 'palliative care':

1. A descriptive term which describes the non-disease-modifying-but-hopefully-quality-of-life-improving-ie-symptom-alleviating aspects of medical care (delivered in whatever settings by whomever and without any implication one way or the other if disease-modifying/life-prolonging care is being concurrently given). Similar to, but often used a little distinctively, from 'supportive care.' Not necessarily given by 'palliative care' clinicians.
   
2. A descriptive term to describe a global approach to the medical care of a patient (given by whomever) which is solely symptom-alleviating without any disease-modifying aspects (in certain circumstances such as when a patient is receiving this care near to death some people call this 'comfort-care' or 'comfort-only care'). Not necessarily given by 'palliative care' clinicians.
   
3. Care given by specialist-level palliative care clinicians and teams (which depending on the situation always involves attempts at 'quality of life improving care' but may or may not involve giving or advocating for life-prolonging interventions and under no circumstances should imply one way or the other if disease-modifying care is being concurrently provided or not)
   
4. Heck it's also used for disease-modifying but non-curative interventions as well ('palliative chemotherapy' to refer to life-prolonging but non-curative chemo, a whole range of 'palliative' surgeries)
5. I'm sure there are other flavors as well.

The authors here are using palliative care in the #2 sense, whereas most of us in the field today I assume think of the term in the #1 and #3 senses. I don't think this is quibbling over subtleties of language, and that these distinctions are important, for a variety of reasons, including but not limited to the fact that those who think of 'palliative care' in only the 2nd sense 1) limit access of patients to palliative care specialist services for needy patients still receiving disease-modifying care (which is most of them), 2) frightens patients, 3) creates situations in which other providers make inaccurate assumptions about a patient's prognosis and goals due to the fact that a palliative care team is involved in a patient's care for some reason.

An excellent editorial touches on those issues, and goes into much more detail about how the piece is perhaps a wee bit off target, albeit in a polite and less wheezy manner than me above. There is sort of a 'phuleeze' quality to the editorial (as in it's not exactly fair to only use examples about hairy cell leukemia - a disease with fantastic and remarkable treatment breakthroughs in the last decades unlike most solid tumors - as well as suggesting maybe perhaps there is more of a problem nationally with poor quality end of life care (etc. etc.) and not so much with patients being inappropriately railroaded into 'palliative care'?). Maybe? Perhaps?